Wednesday, May 26, 2010

For a LONG time Sophie was working primarily on gross motor skills. So much so that some of her other areas of development had to take a back seat while she learned to walk. Watching her today, you would never know how hard she had to work to get here. Her stride is confident, balanced, strong, centered, purposeful, and her gait is nice and tight. Now that her attention is diverted elsewhere, we are seeing an EXPLOSION of new skills. I cannot begin to keep up with my beautiful girl.even at home, one of her favorite activities is the play kitchen and food

So, to be short, in her incredibly wonderful playgroup today she spoke TWO new words, water and splash. She said this while playing at a water table. In the table were 3 sets of animals; a momma duck and 3 baby ducks, a momma pig and 3 baby pigs, and a momma whale/fish and 3 babies. It's not unusual for Sophie to dislike it when she gets her hands or clothes wet (even if it is just water). Not today. She was soaked and loving it. Not only did she bust out with 2 new words, but she spent 20 minutes matching the correct babies with their mammas. When the piglets were with the mamma duck (oh, and she was quacking and oinking too) she would fix them. Matching! Her DT Judy will be so proud!can't get her to eat real pizza, but share pretend pizza with a friend and she's on it!

Last week, she surprised me by washing her own hands before snack time. Today I got it on camera. Watch in amazement as my baby girl shows us what she can do. To those who have no experience with special needs, you need to know that this is a BIG deal. She knows what she is supposed to do, where, and how. She can't get the soap on her own, but when asked, she looks to where it is. Later, during music time, listen for her pretend snore while bear has gone to sleep.

Priceless!

on a side note, I do try and label my posts so that they can be searched. I have recently noticed that rarely does a post get labeled with "disability," or "down syndrome" without also being labelled "happiness."

Tuesday, May 25, 2010

non-special needs parents, try and keep up, or leave me a question in the comments. The world of special needs often sounds something like THIS from the movie, Good Morning Vietnam.

Today we graduated from the fairy tale land of IFSPs to IEPs. Just how in the world is my girl almost 3 years old?! I baked brownies during breakfast so that they would still be warm for our 10:45 meeting. I am not above bribing through chocolate baked goods. (yes, they went over quite well)

Most of our faithful team from Early Intervention (EI) joined us that have been with us for years (ST, DT, OT) though PT couldn't make it. I have come to love Sophie's therapists dearly and will miss them very much. Mark sat next to me as we listened to 9 professionals discuss our daughter's strengths and weaknesses. Does a parent ever truly get used to that? Together we wrote her first IEP. She will be considered a transfer when we move, though technically she won't turn 3 until we have been in our new home for less than 2 weeks. It needed to be really comprehensive because our new team will have to follow the transfer IEP as closely as possible, by law. Only after they have had some time to get to know Sophie can we meet for the purpose of changing it.

Unbelievably services (as in preschool with special ed support) are available through the summer in our new state. As of now we have elected to continue in-home therapies for the summer months and then enroll her in preschool in the fall. According to our new case manager, this is available to us.

I wish we could take our EI therapists (and even the team that works in early ed here) with us when we move. The writing of Sophie's IEP went swimmingly. I did not hesitate to state my requests and had very few times where I was met with resistance. In each case I was backed up by either an EI therapist or an Early Ed therapist. We have an IEP ready to go that is really, really well tailored to her needs. Some of the goals or supports are ones I hadn't even thought of, but our great team is on her side and they want the best for Sophie. Easy peasy.

I suspect that future IEPs will not be such a piece of cake (or brownies as it were). Especially as I felt such comfort and solidarity from our EI team's presence. Today was like an IEP on training wheels and after today, the wheels are coming off and we will be on our own. I know we can handle it, but I recognize that we have been in a very good place for 3 years of EI. So much is changing.

We have begun a long, long drawn out series of goodbyes in our current home town. Today, we checked one big item off of our to do list and I left the building grinning from ear to ear. Since we had Respite watching the monkeys in the zoo for another hour, Mark and I headed for a slice of pizza and a pint of Guinness for lunch. Now, if only the air conditioning repair people could get here before next week to recharge our freon as it's eighty-freakin-six degrees in this house! Oh well. It's nothing that another cold pint can't cure!

Sunday, May 16, 2010

1st of all, I have to acknowledge Helena's 1st birthday today. I have been working on her b-day post, but it's not ready and this just couldn't wait. I can't believe this little beauty is 1 already.

On Mother's Day, Mark surprised me with reserved seating tickets to see Special Olympics Chairman and CEO Tim Shriver give the university commencement address. After MUCH finagling and contacting the Chancellors office, the Office of the President, and the national office of SO, he had also arranged a meet and greet for our little family.

The video footage is really poor quality. The first clip in the montage is from the 10:30am ceremony with our crappy camera just as the battery died and before we could swap it for either of the 2 back up batteries. (no Vicky comments from the peanut gallery. I've changed my name. If it is good enough for Tim, it is good enough for me). Then there are just a couple of shots from when we had the privilege of hanging out with Mr. Shriver and Chris Kennedy. Then, we nabbed the last video clip of the 2pm ceremony when he spoke again from live streaming online (which has a terrible video/audio delay that I will work on later).

The story of how this came to be is just as great as the meeting itself and it deserves to be told in full. However, today is Helena's 1st birthday and she just got up from her nap. So, enjoy the very rough draft montage while I go squeeze my girl.

Saturday, May 15, 2010

Tonight I had the pleasure of escaping to the home of a friend that I met through Alexander's preschool. It's funny, the way we connect to other women as we age. In high school and college, friendships came as easy as breathing air. Social outlets were plentiful. As I have settled into my new life as Wife and 30 something Mom, things have changed, for me at least. No longer do I plan my weekends around which band I MUST check out, but rather what family activity has been inked on the calendar for months. My circle of friends is small and while not exclusive, it has become extraordinary. My BS tolerance level has plummeted and I let in only those who truly add positive energy into my life.

Tonight I had a sitter as Mark was working late. True to form, I laid out the kids' pj's, wrote up bedtime instructions, and then as an after-thought, dressed myself in a somewhat presentable (wrinkled) shirt-pulled out of a laundry basket I neglected to put away 3 months ago, just moments before I left the house. I pretended that adding a headband was "doing my hair." But, hey I was wearing lipstick and baubles on my ears (fancy).Tonight I went to a wine tasting at a friend's house. When you walk into her beautiful home you are enveloped by warmth and acceptance. You are encouraged to kick off your shoes and enjoy yourself. You don't want to leave. Our evening consisted of creamy cheeses and crackers and uproarious laughter. A talented Sommelier in training guided our journey through whine/wine country this evening and I'm sure she got more than she bargained for. You see, we were a group of moms gathered together, AWAY FROM OUR HOMES, KIDS & HUSBANDS and we loved every minute of it.

Tonight we discussed our lack of sleep, our wardrobes that typically consist of yoga pants and t-shirts with baby snot encrusted on the shoulders. We spoke of vacations, in-laws (mine AWESOME, others - not so much), and Dollywood. We marvelled at all that we do as working moms (whether paid or unpaid) and shared fears and feelings of inadequacy as mothers. We spoke of our guilt as it pertained to the quality and quantity of time spent with our children. The wine was wonderful. The company, exquisite.

Tonight we planned our next evening which will consist of more whine/wine, a dress code of pajama pants, and a campy 90s romance movie. The plot: a 30-something wife has a crisis of identity and runs away to spend a wild weekend with her gardener/tree trimmer. At the end she must choose between her husband and her fling.

Tonight I learned that "full bodied" refers to the alcohol content of a wine, not the richness of taste. I learned that most Chardonnays are aged in oak barrels. That oak brings out the subdued characteristics or 'notes' found in the wine, such as vanilla. That wine can come from all over the world and that many factors during the life of the grapes will determine how it eventually presents itself. Wine can change over time when you factor in age and how it is cared for. Environment, home of origin, caretakers, where development takes place; sounds an awful lot like how we became the women we are today, doesn't it?

So, after generous samples of six yummy wines, tonight I happily embrace the label "full-bodied." Yum!

Saturday, May 8, 2010

2 quick things I just had to share. A few days ago we were watching the Signing Times. During a song, Sophie got up and left the room. I thought that was odd because usually she LOVES watching these DVDs. The song was about hats. Sophie returned to the living room with her daddy's baseball cap in her hands. She sat down and put it on and continued watching the show.

Do you understand what I just typed? She understood the song was about hats. She remembered that there was a hat in another room. She went into the other room and retrieved it from up high on the table, came back and put it on.

When I realized what I had witnessed, I laughed and cried and clapped and hugged her so tight.

Then just now her daddy put a baseball game into the Wii. As it was loading, she went up to the tv and (for the 1st time) said "baseball."

Somebody come peel me off the floor! Best Mother's Day present - EVER!

Friday, May 7, 2010

(said with chest puffed out and cape flapping in the wind). It's a lame super hero name, (or maybe super villain name) but it is the one I claim for the time being. My time is spent planning our lives here in CU for the next 6 weeks, planning Sophie's IEP (currently in progress), planning her transfer, planning where we will actually live in our new time zone, planning the packing and moving, planning summer VBS/swimming/baseball/etc. lessons (here/PA?), planning a superfantasticamazing conference on safety and violence prevention for people with developmental disabilities, their loved ones, and professionals, and planning my girls' birthdays. Planning on how to keep the wine consumption to a minimum and not gain 20 lbs.

The latest news is that a house purchase fell through and I believe it was a blessing. We will go back to my original plan of renting for at least a year to get to know the area before committing a vomit-inducing amount of money. FINALLY (through my tireless agent's research, err, BFF from all the way back to the 6th grade, Mrs. Darcy) we appear to have a house - in the top school district - for the right $ - and the right time frame! (per FAXed lease tonight from eccentric, highly thorough landlord who looks like the Gortman's fisherman)! Knowing you won't have a place to live in less than 2 months can be quite the stress inducer, let me tell ya!

The safety conference is really coming along well. I'll post the brochure soon, but sufficet to say, it is a melting pot of my 2 life's passions. We have 5 tracks of sessions for all members of the family, regardless of age or ability. Track 1: For parents, guardians, and professionals, Bodies, Boundaries, & Sexuality: The role of Sexuality Education in Sexual Abuse Prevention Supporting Healthy Sexuality as a strategy for Sexual Abuse Prevention, by Terri Couwenhoven, M.S. Track 2: For ages 0-4, Childcare mixed group for children with and without disabilities in a really amazing indoor play ground. Track 3: For ages 5-11, mixed group for children with and without disabilities, Heroes In Action® School Smarts Anti-Bullying Training Program, by Ray Amanat. Track 4: For ages 12 and up, for individuals with intellectual disabilities, Speaking Up For Safety: A Self-Advocates Workshop on Sexual Abuse, Shirley Paceley of www.bluetowertraining.com. Track 5: For siblings of individuals with intellectual disabilities, ages 12 and up, Sibling Workshop, by Dr. Laurie Kramer. Also an exhibit hall with community organizations and resources/services on safety issues.

Have I mentioned that this conference is 2 days before we move?

Doesn't matter. It is my passion and I am so proud of it.

So, lately, between the packing and planning, I've distracted myself with the upcoming birthdays of my 2 girls. It's hard to believe that Helena will be 1. I'm so behind on all the posts I've started and left unfinished on her developments. Sophie will be 3 soon as well. Just how did that happen? How did my baby girl become a full fledged kid?

During our next trip back to my hometown in a few weeks we will have a bash for the girls at my little sister's house. The theme will be the children's cartoon Ni Hao, Kai Lan (a little girl of Chinese American descent) that all 3 of my kids LOVE. I've gone nuts with the planning. More on that soon.

The Downside Up charity seeks to improve the life of children who suffer(?) from Down’s syndrome in Russia.

Please leave your thoughts in the comments.

1: We all know that people with Down syndrome do not suffer from it.

2: I wonder about their figures as they seem low.

3. So much needs to be done to change societal attitudes and increase programs and services to improve the lives of people who happen to have Ds in Eastern Europe. Despite some of the problems I have with the language, I'm thrilled at the idea that this type of work is being done.

Wednesday, May 5, 2010

My #20? Because we are here to hold each other as we walk through the fire. We give back, educate, and help each other, from those new on their journey, to those experiencing a new and frightening diagnosis, or who are simply having a bad day. We are here and understand in a way that others simply cannot.

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INSPIRATIONAL WORDS

for new parents of a childwith Down syndrome..."There’s so much to consider! About learning how to manage prejudice, and about what to say and when to say it, and about how to juggle schedules and therapies and all that. There’s forgiveness, for all of us, and strength, and love, and hope, too. And faith, in yourself, and your child. Let your child show you the way. You will find it, together, and it will be amazing. It will be all the things you hoped it would be; it’s all there, waiting for you."